briarrose

Great idea and picture! Thanks for bringing Bernie to our attention!

WM - 1. Fatigue can be more than thyroid problems, some people find it to be just part of the whole POTS process. Are you anemic? 2. There are several other beta blockers that they can try you on. If one doesn't work have them prescribe you another. 3. What's to straighten out? 4. Let's not go there....money back please! 5. Fired....Money back please! And return to med school or better yet, I have some handouts that I would be happy to send him that explains the basics! If you see Dr. Grubb at least once a year I'm sure that they can switch you around to different beta blockers. You might also call Dr. Grubb's nurse and have them send you some handouts and there are several great websites for info. When are you supposed to see Grubb again? As for specialist, did you look on the NDRF website for specialists in your state? Sorry can't help you with the disability thing. I can't go that route no matter how bad I get, I have to support my kids and believe me there have been times when I didn't think I could go another day.

NCS is Neurocardiogenic syncope

Cool idea, thx!

Can we apply for grants anywhere to get the brochures printed? Maybe people that surf the web on a regular basis can look for some grant/hand out money. I hope that everyone belongs to IGive to help support Dinet. Maybe get a printing service to give a discount or get the brochures printed at any schools that might provide that service. Hospitals have their own print shops, maybe we can approach them and see if they would be willing to do outside work. Nina thank you for offering your website to add pictures, Cool! You guys do great work and I love this website, it's user friendly and the fact that you guys are active in the board make it 110% fantastic! Thank you so much for all of your hard work, time and dedication. Sincerely Steph

That would explain why Dr. Grubb looks about a decade younger

Thanks Nina! I had the video tapes from the last one and it was quite interesting with alot of very good questions asked. That's how I found Dr. Grubb, thank god for Grubb! steph

I would love to put a face to the names and meet some of you guys. Does anyone know if there is going to be a conference this year or not? I emailed the NDRF and am waiting for a response. I fear it's getting too late if they are planning on it. Aren't they supposed to be every other year? Steph

Nina You guys do great work and I'm so happy that your here! I wasn't even making a suggestion really. I was just making a statement. Thinking about starting my own archive filing system here at home, that way I can refer back to peoples great comments. Keep up the great work and very grateful for your knowledgable answers too. Steph

Old Library system - Card Catalog As I have spent the last hour looking for some information from previous posts that I would like to send to someone, I got to thinking. I try to save things in folders that are interesting or helpful, but sometimes I don?t know how good a posting was until months later when I?m up against something new myself or trying to share information with others and then I?m frantically ?searching? for hours. I wish we could save folders and refer back to them under topics, this might be extremely helpful for all the new people too as they are looking for explanations for symptoms.

I'm pretty sure that I know what your talking about and I don't think it's related at all to the armpit pain. The arm pain is swollen lymphs and sometimes excrutiating pain that can wake you out of a dead sleep vs. the arm ache that can be intense and radiate, although it can go into my face and shoulder. I'm sorry, I'm sure that someone else can help better in this area. Other than Neurontin for my achy joints I haven't found anything that helps much. I've just learned to accept pain. I think one of the worst is the pain that you get in your back that keeps you from breathing. Steph

Sue Hang in there, it will pass and were here for you. It's nice that you have such a loyal friend to be with you and stand by your side in such a horrible time. And thank god for EM always providing and finding the humor in all of this. Keep up those cute little news briefs please! Loved the last one, hope you don't mind if I try to find it to paste on here: (sorry EM I couldn't resist as I have printed your cute little antidotes and stuck them to my door - Thank you!) No matter how long, I've had this I still can't seem to gracefully accept the "bad days". And perhaps it wouldn't be so bad as long as they came with some kind of disclaimer like: "This is a test. This is only a test. For the next 24 hours you will be unable to stand reliably, go to the grocery store, cook dinner for your family, or in any other way function as a normal productive member of society. However, by tomorrow you will feel a bit better and resume your limited capacity functions. Thank you this concludes the test of the POTS emergency channel." Steph

I've had mixed experiences with flying from ok to just horrible. Flying can bring on the worst muscle spasms everywhere, nausea, tachycardia and blood pressure swings. Don't let me scare you because these are symptoms I normally have. It's just they can be very intensified. Just drink plenty of fluid and salts for a couple of days before you fly - hydrate well! Take gatorade with you on the plane. Don't let this illness keep you from doing things if and when you can help it. steph

I have the migraine/headache problem too. I actually found that Neurontin has helped with most of my symptoms (pain in general.) I have less migraines when I'm taking a beta blocker. When I do develop a migraine, Imitrex has worked pretty well for me without any side effects. steph

I didn't know that I actually had high readings or blood pressure swings until they did my tilt table, I was amazed. During the tilt my low was 107/79 and my high was 152/63. I have my print out from the tilt and every two minutes my pressure was something completely different. That was over a year ago and I had never dropped below 100 at that time. About 6 months ago the severe hypotension started and I have been documented at 60/40 during an exacerbation of POTS.

This has just been an observation, but as I continue to switch back to some of my old deodorants I'm having increased swelling and pain. Possibly sensitivity to some chemicals or scents they use. I can actually sometimes tell when I put it on that I will have continued problems (pain) because now it will sting going on. I was very happy with my last deodorant and it's been months since I had that horrible pain and swelling. For at least the last 6 months I've been use Tom's of Maine which is a natural deodorant, but it no longer provides protection from B.O. I wonder if I could continue to use that with Odaban? Pamyla, Odaban is the correct one that I read about at the NDRF. I didn't realize that you have to use it with your regular deodorant, what a bummer. MightyMouse thx for your logical input. Roy & llp479 - thx for your input too, I'm glad that someone else noticed. Steph

You should see if your professor will charge you less or give you a price break after your insurance pays. Make sure that they don't diagnose you officially. Good luck an sorry that you have to strugle through this nightmere too. BTW, I'm in the US. Steph

I'm sorry but I'm wiped out, just got home from work, so forgive me if I ask a stupid question. Will your insurance company not cover the provider or would they only pay half of any professor that you see? If it's because he's not covered on the plan, then you can state that you must see him as a medical necessity. That you have a rare chronic illness and he is one of only a few that can manage your treatment. Steph

Gayla Thank you very much for the heads up. I was talking to a friend last night at work about this very issue. I was worried about finding a job and decent health care that could continue my IV Iron, Epogen injections and other maintenance. Thx Steph

Thank you Nina for that information, you've answered some of my questions about different gluten free products as well. It will be very helpful for my daughter. Geneva I don't envy you for going through the diet changes. I hope that is food I never have to eliminate from my diet or I will be anorexic. It's hard for my daughter but she's been a trooper. Good luck and keep us posted on how your doing.

I second Mighty Mouse. You need to see a cardiologist right away. Let us know if there is anything we can do for you and hang in there. steph

Way to go Deanna! Enjoy your happiness, you deserve it and I'm excited for you! steph

Kat I think we all experience various pains. I can't take motrin because of my stomach problems. I have had times where I get severe pains in my chest or back and can't breathe. I get them in my arms, neck and jaw (sometimes I think I'm having a heart attack.) I'm not even going to talk about the horrific joint pain. As for what to do, well I think each of us have found individual things to work - in other words what works for one doesn't necessarily work for another person. It will be trial in error for you until you figure out your body. It will also depend on what you can tolerate. I think many of us have a very high thresh hold for pain and tolerate more than the normal person. When I start having problems I usually take some tylenol, heating pad, Neurontin has been a wonder drug for me and relieves me of everything from joint pain, pain in general and helps my migraines. For those really bad times I have vicodin in the house that I get about once a year and only take it in an emergency, but I'm chemically sensitive so usually 1/2 - 1 tablet is all I need. However in December I had pain so severe in my back that I couldn't breathe, sleep or hardly move. After about 8 hours I finally went to the emergency room. I was there for 14 hours having tests run. Of course they couldn't explain the pain but they kept me medicated the whole time so I was relieved from my symptoms. Just listen to your body and be willing to try different things until you can nail it down. Steph

That's kind of a tough one. It's important to be happy and stressfree. Good men are hard to find, I'm still looking (been divorced for over a decade and I'm raising 6 children on my own.) I'm lonely but have learned to manage, life is pretty good I don't have to account to anyone, but wouldn't mind if it was the right guy either. I'm glad that you found someone that loves and accepts you (all of you.) Your friends and family are probably just worried for you and want you to be happy too. They will accept the idea, just give them time. They'll probably come around after you move in with him and see that your alright and happy. The country is a nice place to be and I have recently been thinking about moving to Montana myself. I know it's completely new and the medical care ***** (but I can't let this illness control every aspect of my life, if you know what I mean.) Live a little! My two cents worth. Hope it works out for you. Just relax and roll with the flow. Steph

Roy Not sure what to tell you here. My allergies are tolerable and when I can't stand it I take half a benadryl at bedtime 12.5 mg. that usually seems to relieve me of my symptoms enough. I would find a good allergist that possibly knows about dysautonomia. I know the one that I take my children to is very knowledgeable. Steph